A panel appointed by the American Psychiatric Association has proposed changes to the definition of autism that advocates fear could curtail heightening rates of autism diagnoses and make it more difficult to receive treatment.
The proposal comes as part of an update to the Diagnostic and Statistical Manual of Mental Disorders (DSM) for its upcoming fifth edition.
The proposed changes would compress Asperger’s syndrome, “pervasive developmental disorder, not otherwise specified” (PDD-NOS) and autism spectrum disorder (ASD) into one group.
The Arc, a human rights organization that represents people with intellectual and developmental disabilities, expressed concern over the proposal.
The Arc CEO Peter Berns said in a statement, “Over the last decade, we have made major strides in ensuring that people diagnosed with autism, Asperger’s syndrome and PDD-NOS have access to the services that advance their health, education, independent living skills and work skills. These efforts have increased inclusion in educational settings, and in society, young adults with disabilities are gaining life skills that can lead to jobs and independence.”
“The unintended consequences of a diagnostic definition change could potentially limit access to the services that children and adults with autism and PDD-NOS need, potentially putting at risk their education and the health and economic stability of their own lives and the lives of their families,” Berns said.
A coalition of autism-related organizations including the Autism Action Network released a statement opposing changes to the definition. The statement said, “We believe that the new definition of ‘autism’ will result in tens of thousands, perhaps hundreds of thousands of people with autism losing their autism diagnosis and with that the services, education and insurance coverage we have fought so hard to provide.”
National Autism Association President Wendy Fournier said, “The proposed criteria make it significantly more difficult to qualify for an autism spectrum diagnosis and they completely eliminate the categories of PDD-NOS and Asperger’s Disorder. In a well-intentioned desire to improve the specificity of an ASD diagnosis, the new criteria may in fact go too far and create unintended consequences. It is critically important that any diagnosis address all the symptoms of an individual and allow them the supports they need.”
According to the Centers for Disease Control and Prevention, 1 in 110 children have an autism spectrum disorder.
Mary Holland, managing director of the Elizabeth Birt Center for Autism Law and Advocacy, also expressed concern over the implications that a new definition could have for treatment.
“Even in the states that have passed autism insurance legislation, the tightening of the criteria for autism may exclude children who need treatment with Applied Behavior Analysis,” she said in a statement. “Our organizations advocate that the criteria should err on the side of over-diagnosing rather than under-diagnosing since no harm is likely from providing educational services to a young child, but great potential can be lost by not providing treatment.”
The American Psychiatric Association plans to draft text for the DSM-5 through November and to finalize changes by December 31st. The DSM-5 is set to be released in May 2013.
This article was published in the March 2012 issue of Able News.
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